Friday, August 30, 2013

Spinal Cord Injury Study

As many of you know, I spent part of the 1974 and all of the 1974–'75 school year going to school at the University of California, Berkeley. That first year, I lived in a special residence program for students with disabilities at Cowell Memorial Hospital, which was the student health service on campus. The third floor had one wing with twelve students of which ten of us had spinal cord injuries, and four of us had broken our necks playing football.

It was an excellent program and way ahead of its time for students with severe disabilities attending classes, living on campus and a pioneer in helping to get educations for students with disabilities.

When we left for summer vacation, they closed the door and integrated us into the general population of the dormitories. At the time, that was unheard of. But, Berkeley had Ed Roberts! Ed was a pioneer for the disability community, which started with that residence program.

When I came back to Berkeley in the fall of 1974, my dad and uncle came with me. We dropped Terry off at McClellan Air Force Base near Sacramento, and dad spent a few days before he flew back to Worthington. 

I got settled in to Room 118 Putnam Hall in Unit 1 of the dormitories just off the campus. Sometime during that year, professor Nancy Crewe, PhD, from the University of Minnesota who was beginning a Longitudinal Spinal Cord Injury Study, contacted me and she wanted to know if I wanted to be a part of it.

I was more than anxious to be a part of it, and Nancy and one of her PhD students flew to Berkeley to interview me for the first part of the study. While Nancy was at the University of Minnesota, she interviewed me several times in person, or sent out forms for her study on our successes, failures, frustrations, education, employment, general health and a host of other concerns.

It was always interesting to know I was a part of a study of such importance she would fly halfway across the country to meet me for the first time. Once I moved back to Minneapolis, I worked with her and one of her PhD students, Jim Krause. Jim is also a C5-6 quad, and we have many similarities.

Nancy eventually moved to Michigan State University and left the study in Jim and his associates very capable hands. Once Jim received his PhD, he moved on to Shepherd Spinal Center in Atlanta where he worked for several years on the study. Eventually, Jim moved to the Medical University of South Carolina where the survey is being worked on today.

That is what brought me to this blog post and the meeting Richard Aust, Program Coordinator II, from the Medical University of South Carolina. Tuesday, we spent three hours with four participants in the study, of which I was the only one who has been with it since the beginning.

We had an interesting conversation, and he had an agenda with questions he wanted to get through. There were periods during our discussion where I made it rather difficult to keep on his agenda!

He did come up to me during our break and thanked me for my input. I believe he got a little more from me than what he was expecting! I told him, "I thought that is why you wanted me here was to give my opinion. Am I correct?" I gave him a polite smile and he agreed with me. The entire three hours was videotaped so Jim will be able to see just what took place.

It just so happened, I had several of my books with me and gave the other three participants and Richard a copy to share with Jim. Jim already has read it in ebook form, but I want them to have paperback versions and see if we can get one version or the other into the hands of the remaining participants.

At one point, I asked Richard how many of the original one hundred participants were still involved in the program. Care to take a guess? I was pleasantly surprised when he said, "Forty-two of the original one hundred are still participating!" After nearly forty years of living with spinal cord injury, 42% of us are still alive and able to fog a mirror!

One of the participants had his personal care attendant with him, and I noticed she was already reading the book before our session was through. I received an email from him the next day, and he said his attendant thought my book was "Wonderful!" He said he was going to read it now. I will take that endorsement any day!

On my way out of the building, I ran into another friend and his wife who were waiting to go into the next session. I am anxious to see what this round of information will tell the researchers about our study. 

I look forward to your comments.



Saturday, August 24, 2013

I Took Another Little Vacation

It seems I can never go too long without my body giving me a reminder I am still a quad! It did so again the last ten days. About that long ago, I started feeling a low-grade fever, lethargic, shortness of breath and just not up to my usual self. I had no energy and knew what was coming on.

It was the beginning of another urinary tract infection, and I hoped I could stay ahead of it by getting a urine specimen into the lab on Monday. It did not quite work out that way. By Tuesday night, my fever had gone up over 100°, I was having a very hard time breathing, my hands and fingers were ice cold and I was just feeling poorly.

I called my doctor's office and he told me to go into the emergency room and have them check me out. After several hours in the emergency room at Abbott Northwestern Hospital, they checked me in and started administering IV antibiotics to help battle the E. coli bacteria in me.  They gave me two of the heavy hitters, Vancomycin and Zosyn which is one I had never heard of before.

After one dose of the IV antibiotics, I started feeling better, my temperature was coming down and my blood pressure was starting to come down.

I got out of the hospital yesterday, and still feel a little weak. However, my temperature is down, my hands and fingers are back to normal and the lethargy is gone. I had a decent night's sleep and feel fairly rested today. I could not say that after my first night in the hospital. I did not bring my Bi-Pap unit with me to the hospital, so that first night was very uneasy as I was in full sleep apneic mode going to sleep and waking up every thirty seconds!

I was first diagnosed with sleep apnea in 1996 and have been on Bi-Pap ever since. For those of you that do not know anything about sleep apnea, it is not something you want to deal with. There are various levels of restless sleep, but basically, it does not allow you to get good, REM sleep and you often feel more tired in the morning then when you went to bed the night before.

I remember watching a news report in my early twenties about how many American adults suffered from sleep disorders. At the time, I was getting good sleep and could not imagine how those poor people must suffer by not getting good sleep. Now I know what that report was all about.

I am happy to say the pharmaceutical companies do have their place in my life; I just cannot believe how expensive they are!

As always, I look forward to your comments.



Wednesday, August 14, 2013

Fifty-nine Years Ago Today

Fifty-nine years ago today my parents were married in a small, civil ceremony in Ivanhoe, Minnesota. Here is a picture of my parents at their wedding reception in the basement of the parsonage in Aurora, South Dakota:

Click on the image to make it larger:

Their marriage, like so many others, did not end with those three words, "happily ever after."  However, it did produce six wonderful children who I am proud to say have turned into wonderful adults.

Mom likes to jokingly say, "I didn't raise no dummies." Of course, the irony in that statement is the improper grammar, which she uses to make her point very well. 

After their wedding, Dad went on to finish his bachelor's degree from South Dakota State College in nearby Brookings in 1956. Over the years, as SDSC started offering postgraduate degree programs and became South Dakota State University, he earned two masters degrees, one in Physical and Health Education in 1961, and the other one was in Guidance and Counseling in 1967.

Of course, Dad did not earn those degrees on his own. He had help. Here is a photograph of his typist and her assistant:

I was probably more of a nuisance than an assistant; but since this is my story I am calling that large-diapered boy an assistant. I love the antique secretary behind my Mom's chair. Unfortunately, that was put in storage and never survived. We did not know what a treasure we had when we lived above the White Creamery in that tiny apartment.

We moved many times as my dad's career began to develop. When we moved to Worthington in February 1969, I was just thirteen years old. Worthington was town number eight and the house at 716 West Shore Drive was the sixteenth different location I had lived in.

Once Mom and Dad were married, they lived in a one-room utility shed on her maternal grandfather's farm for a few months. After only three or four months of being married, they moved into a house just off Main Street in Brookings and were caregivers for Fred Baker who was roughly one hundred years old. I was born when they lived with Fred.

After that school year, we moved three times. The first stop was a farm just outside of White. Then a few months about the Gambles store, a few more months above the creamery and the Odyssey was on.

That fall Dad got his first teaching and coaching job in tiny Revillo, South Dakota for two years where we lived in a small apartment behind the local café for one year. Next year saw us living in a big house until it was time to move to the next town. Are you beginning to see a theme of change and moving here?

It seems we were always moving. We went wherever my dad's job took us. Every job he got was better than the last one. Every move he made, whether it was his choice or the school board's decision to not renew his contract was an improvement over the last one. Plus, he was earning his advanced degrees, and becoming more qualified to be more of an asset to a school district.

As the years went by, our family was growing. Kathleen came along two years after me. Rick was three years later. Vicki came four years after Rick and Tammy followed four years later. Five years after Tammy, Chad arrived. He was born two years after my accident. Here is a picture of Chad and Dad on Dad's farm shortly before he died July 23, 2006:

My parents divorced in 1991. Chad had just finished high school, and Mom and Chad moved to a small house in St. Louis Park, Minnesota where Mom still lives today. 

The day Mom and I took Dad to the Mayo Clinic for the last time when the doctors told him he did not need to come back because there was nothing more they could do for him unless he wanted to have chemotherapy, we had a very special moment before Mom and I left Dad at his farm.

Dad gave me a big hug as we both were crying, he said, "We had a good run, didn't we? He was still talking about running even as he was dying.

Then it was Mom's turn for a goodbye hug. Mom said as she hugged him, "I loved you a lot longer than I liked you."

That comment puzzled my dad and he did not know quite what to say. It was a very touching moment and one I will always remember.

I have so many stories I could tell you about what happened fifty-nine years ago today; but I have gone on long enough. Thanks for reading. This was good for me!

As always, I look forward to your comments.



Friday, August 9, 2013

Clyde Turner's Educational Basketball Camp

I had fun in the last thirty hours. Please indulge me and let me tell you what happened. On Thursday after my acupuncture appointment, I ran a few errands. One of them was to stop off at the OfficeMax store and get a new printer cartridge. I found my printer but could not locate the printer cartridges.

So, I wandered around the store looking for someone to help me. I got back by their copy area and waited my turn for the next available employee. She happened to be helping a large, black man who I recognized as Clyde. Remind you; Clyde is hard to miss. He is six feet nine inches tall and casts a large shadow.

Clyde played for the University of Minnesota in the early seventies with Jim Brewer, Ron Behagan, Corky Taylor and Dave Winfield, among others. That team won the 1972 BIG 10 Championship. They were fun to watch!  Bill Musselman was their coach and did a fun, choreographed pregame show to "Sweet Georgia Brown" and "Keep The Ball Rollin'" which filled Williams Arena well before game time just to watch the show.

When I coached at Golden Valley Lutheran College, Phil Saunders had us doing that same routine at our home games in a tiny gymnasium that was packed an hour before tip-off. If you had tickets to Golden Gopher games back then, you know what I am talking about.

I am getting off task again! Meanwhile, back to OfficeMax and the copy center. When the woman came out from behind the counter to help me get my printer cartridge, she was standing about five feet from Clyde. I told her I had two things I needed help with. The first one was if she knew Clyde Turner played basketball for the Gophers back in the early seventies? I heard he could still play! Of course, I said it loud enough so he could hear me. You should have seen the look he gave me. It was precious!

He said, "I know Clyde Turner."

I acted surprised and replied,  "Clyde, you're Clyde!"

"No, I'm his twin brother."

I said, "I didn't know Clyde had a twin brother."

Clyde replied, "He doesn't, I am Clyde."

He was playing me just like I was playing with him. It was a great exchange, something I will never forget. He told me I looked familiar. Then I told him I had spoken at his camp several years ago. In reality, I spoke at its camps twice in 1994! He remembered my visits.

We started talking and I gave him my book to show him the picture of the Golden Valley Lutheran College Royals the first season I was one of their assistant coaches in 1977. He was pleased to see all four of the coaches as he knew all four of us. It was another one of those fun exchanges I have all the time.

He told me he was having a camp right now and was ending today at 4 PM with the parents coming for an award ceremony. I asked him if you would like to let me say a few words to close their ceremony. He said that would be great!

So this afternoon about 2:30, I went up to the Phillips Community Center, sat in on the last hour and a half of camp, gave a little motivational speech, talked about Clyde and all he has accomplished outside of basketball, told how valuable a mentor and coach he was, discussed the staff and their commitment to helping these young people improve their basketball skills, and ultimately their attitudes towards life. He has been running his summer camps for twenty-seven years, and has more than ten thousand young people attend those camps!

I found out he had speakers all week long from the business, education and medical fields coming in and talking to the campers about being successful in a chosen field. I really like how he incorporates the educational component into his basketball camp. They learn basketball skills, but more importantly, they learn life skills.

I even got to play with one of the coach/counselors and ended up giving him my ATTITUDE pin! It has been a fun last thirty hours! I truly believe some learning took place.

I look forward to your comments.